What to Know About Tapering Off Steroids When You Have Polymyalgia Rheumatica

Corticosteroids are the first-line treatment for the inflammatory condition polymyalgia rheumatica (PMR), working rapidly and effectively at easing symptoms like morning stiffness, muscle and joint pain, and limited mobility. But while medications like prednisone can bring quick relief, they’re not meant to be a long-term solution, especially at higher doses.

If you’ve been taking steroids for more than a short period, your body begins to adapt to them.

Normally, your adrenal glands produce cortisol, a hormone that plays a key role in metabolism, inflammation, and the stress response. But when you take steroids, your body senses there’s already enough circulating and reduces its own production. Over time, this can lead to adrenal suppression, according to Neal Birnbaum, MD, a rheumatologist and past president of the American College of Rheumatology who’s been practicing for 48 years in San Francisco. He was also diagnosed with PMR in 2000 and was treated with prednisone for almost two years.

“The adrenal gland goes to sleep. It doesn’t die, but it kind of hibernates,” Dr. Birnbaum says.

That’s why tapering is necessary. “As you reduce the dose gradually, that gives the adrenal gland a chance to wake up,” he explains.

If steroids are stopped abruptly, the body may not be able to produce enough cortisol right away. This can lead to withdrawal symptoms — some uncomfortable and some more serious, says Scott Zashin, MD, a rheumatologist in Dallas and a coauthor of several books about arthritis management, including Natural Arthritis Treatment.

“People will get withdrawal symptoms, most commonly fatigue, achiness, nausea, or irritability. But sometimes if it’s significant … it can actually drop your blood pressure, and you can get hypotensive,” Dr. Zashin says.

There’s a second issue, too: Stopping steroids too quickly can cause the underlying PMR to flare. “Those are really the two concerns. The disease flares up and the adrenal gland hasn’t had time to recover,” Birnbaum says.

Tapering helps prevent both problems by gradually reducing the dose while giving the body time to adjust.

There’s no one-size-fits-all tapering schedule that works for everyone with PMR. The process, which usually takes about two years, depends on the patient, how well symptoms are controlled, and how their body responds to dosage changes, according to Aixa Toledo-Garcia, MD, rheumatologist and chief medical officer at The Center for Rheumatology, with locations across New York.

“Patients typically respond dramatically to treatment, often within one week of initiating prednisone at an average dose of 20 mg daily,” Dr. Toledo-Garcia says.

“We tend to find the lowest dose that makes patients feel back to normal. We keep them on that for two to four weeks, and then we start tapering,” Zashin says.

From there, there are different ways to approach it, including:

The Linear Taper A common approach is to reduce the dose in small, steady steps over time, especially in the early phase of treatment.

Your rheumatologist will structure reductions by about 2.5 mg every two to four weeks until you reach 10 mg daily, says Toledo-Garcia. “Beyond this point, tapering is slower, generally by 1 mg every one to two months, while closely monitoring symptoms and inflammatory markers,” she says.

It isn’t always a strict linear taper. If your PMR symptoms resurface — like the hallmark morning stiffness — or you encounter withdrawal symptoms, your doctor may temporarily increase the dose before attempting a slower reduction, Birnbaum says.

“There’s no magic formula. Everybody’s a little different,” he says. “I might overshoot and then have to go back up and come down more slowly.”

The goal isn’t necessarily zero symptoms at all times. Patients and their rheumatology team try to find the lowest dose that keeps symptoms manageable and daily life unaffected, Birnbaum says.

The Alternating Day Method Some clinicians may use alternating doses, taking a slightly higher dose one day and a lower dose the next, to help ease transitions between dose levels.

If a patient has symptom recurrence tapering from 15 mg to 12.5 mg, for example, their doctor may alternate between the two doses every other day, Zashin says. “We might say, ‘Let’s do 15 mg one day and 12.5 the next and alternate for a week or two to give things a little more time,” he explains.

Introducing Other Medications

In some cases, especially if tapering is difficult or side effects are a concern, doctors may introduce additional medications to help manage inflammation while reducing patients’ reliance on steroids.

Methotrexate may be used on occasion. “Early use of methotrexate at 7.5 to 10 mg weekly can be beneficial, particularly in patients at higher risk for long-term steroid side effects like those with diabetes or osteoporosis,” says Toledo-Garcia.

In other cases, it may be a matter of adjusting the type of steroid itself. “Some people surprisingly won’t respond to prednisone but might respond to methylprednisolone instead,” Zashin says.

Talk to your rheumatologist if tapering isn’t going smoothly. Treatment can be adjusted, not just increased or decreased, to better support the process, Zashin says.

As your steroid dose decreases, it’s normal to notice some changes — and not all of them are negative.

“If [tapering] is done correctly, those side effects — like weight gain, fluid retention, [and] even high blood sugar — tend to improve as you lower the dose,” says Zashin.

• Severe fatigue
• Weakness
• Body aches and joint pain
• Irritability and mood swings
• Nausea
• Loss of appetite
• Lightheadedness

The trouble is that these symptoms can also overlap with PMR itself. “It’s sometimes hard to distinguish between steroid withdrawal and recurrence of the disease,” Zashin says. He’ll often monitor symptoms over the course of a week before deciding to increase dosages.

A key concern during tapering is relapse. PMR symptoms can return if tapering goes too fast or dips below a patient’s “control” dose, Birnbaum says. Your doctor will then up your dose to try to get you back to a comfortable baseline.

“Let’s say they went from 10 to 5 mg, but symptoms were coming back. I would have them go back up to the dose that kept them well-controlled,” he says.

While some discomfort during a taper can be expected, certain symptoms shouldn’t be ignored.

Birnbaum says you should contact your rheumatologist if you notice:

• A significant return of pain and stiffness, especially if it interferes with daily activities
• Symptoms that worsen rather than improve over time
• New or unusual symptoms that concern you

“We always want to screen patients for that condition. If a patient develops symptoms of GCA, where they notice any visual changes, that’s when they need to contact their doctor right away,” he says.

• Severe fatigue or weakness
• Dizziness or fainting
• Nausea, vomiting, or abdominal pain
• Low blood pressure

• Gradually tapering off steroids for PMR is essential because stopping too quickly can trigger both a disease flare and potentially serious adrenal insufficiency, in which your body doesn’t produce enough cortisol.
• There’s no one-size-fits-all approach to tapering. Your rheumatologist will gradually decrease your dosage, which can take months to years, based on your symptoms and how well your body responds to new dose changes.
• If symptoms return during a taper, talk to your rheumatologist, who can adjust your dose or treatment plan. Seek emergency care right away if you experience red flags like vision changes, severe weakness, or signs of adrenal crisis.